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First you notice their hair. It's pure white. Their skin is paler, too. Then you see their eyes -- squinty and constantly moving, as though trying unsuccessfully to focus on something.

An albino's look is so distinctive and rare that one Milwaukee man with the disorder says he feels like a one-man walking freak show when he's in public. Only one in 17,000 persons have albinism, and only a handful -- a dozen by most estimates -- live in Milwaukee.

More than a look, albinism is a genetic disorder that reduces the amount of pigment formed in the skin, hair and eyes. The disorder varies in severity and appearance and is caused by an absence or deficiency of the enzyme tyrosinase, which begins the body's pigment-producing process.

Nearly all persons with albinism -- including those profiled here -- are legally blind. They also suffer from photophobia, increased sensitivity to light, and nystagmus, which causes the involuntary eye movements.

Dealing with those problems is difficult enough for albinos, but just as challenging for them is trying to exist in a society that treats them as human oddities. "Whitey," "Santa Claus," "Fluorescent Face," "Snow White" -- they've heard all these names dlrected their way at least once in their lives.

They say they're more self-consclous and maybe not as self-confident because of their albinism, but the five adults profiled here have largely worked out their problems (young "Samantha's" still struggling, though) and are carrying on with their lives as members of the world's very white minority.

Albinism, a mystery to many now, was even more an unknown disease then. Few understood the implications of albinism, including Mary's teachers at her one-room country school. They were unaware of her vision problems and how her near-blindness made it a struggle for her to read and learn.

"That was my first rude awakening to being extremely different," she says.

She recalls squinting to make out the letters in a reading primer one day, unaware that the teacher was watching her from behind. "As I read, she pushed my head down on the book and said, 'There, can you see it now?' She literally pushed my head into the book."

The school administrators eventually realized the girl had special needs and transferred her to a place for visually impaired students.

"I was kicked out of school, to my impression, and I thought it was because I was dumb, and nobody could tell me any different. . . I think, in retrospect, it was that the district didn't want to deal with a visually impaired student. They didn't know what to do with me so they got rid of me, and that has affected me my whole entire life."

Koopman's inferiority problems worsened in her early high school years when boys wouldn't ask her out. "I didn't get dates. I asked this girl, Deb, why don't I get any dates?' And she said, 'Well, Mary, I hear all the guys talking about you. They're all scared of you.' ...She said, 'They look at you as being very sensitive and they're afraid if they tried anything or said anything wrong, you'd cry.' I thought, nobody's ever seen me cry. But I think it's the whiteness and femaleness that made that image come together."

Her self-image was helped somewhat when -- after considerable prodding by friends -- she tried out for the cheerleading squad and made it. Still, she wasn't convinced she earned the accomplishment.

"It was the first time there were five cheerleaders [on the squad] instead of four, and to me it said they gave it to me. I didn't really earn this, and that's the way I feel about a lot of things."

Today, Koopman has two children (neither have the disease), ages 7 and 9, and runs a daycare center out of her home. "I pride myself in accepting children who are different," she says. "I have had single-parent children and I had a mulatto child and I have me. I thought, one of the things these kids are going to learn in this group is how to accept people, and that was one of my sales pitches [to parents]."

She adds: "I'm good with people because of my albinism. I'm very good at seeing an adult or a child, what their strengths and limitations are, and I'm a pusher without being forceful. I can see a child say 'I can't do this,' and know that somehow, if they keep saying that, that will just permeate their lives. I want to find some way to help them feel successful, by helping them look at the positives as opposed to negatives. Because of my albinism and having to conquer those kinds of things myself is why I'm good at those things."

Much of the space in Mark Burbey's cramped dorm room at the University of Wisconsin-Green Bay is taken up by an electronic keyboard. Although legally blind, the journalism major is a whiz at music. He can hear a song and instantly pound out the same tune. He hopes to join a band, but his vision problems relating to his albinism get in the way. Obviously, he can't get a driver's license.

"A lot of bands will ask you if you have a car -- do you have transportation?" says Burbey, a soft-spoken man who has decorated his room with pictures of heavy metal artists. "I'll say, I don't have access to a car.' That sounds better than 'I can't drive.' It doesn't sound so final, especially when you're first trying to get into a band."

Burbey's determined not to let his albinism get in the way of his music.

"I've been interested in music since I was old enough to reach the keyboard. I haven't taken lessons for years now, but I've learned everything by ear for the simple reason that getting the notes blown up to a size where I can see them [on sheet music] was so difficult. And as far as reading and playing, I was flipping pages all the time."

Burbey, like other albinos, has grown accustomed to the ribblng that comes with the genetic disease. "I remember once, in the fourth grade, I think the best one I ever heard was when somebody called me Fluorescent Face," he says. "That pretty much takes the cake for originality."

Most of what he hears these days is good-natured joking from his friends; when Tone Loc's song "Wild Thing" was a hit, his chums came up with new lyrics for the song and called it "White Thing."

Burbey has used his albinism as fodder for school assignments. While studying the concept of personal space, he wrote about how he's had to consciously back off from people so as not to "violate" their space. He wrote in his paper: "Although I'm legally blind, the various distances which I use to communicate are pretty much the same as those of normally sighted people. However, it wasn't always that way. When I was younger, my eyesight wasn't even as good (or bad) as it is now. I remember talking to people and having them casually back away from me. I would compensate and move closer to them again, thus regaining my own social distance, which I would estimate to be between three and six feet, rather than the usual four to 12.

"I have no real working 'public distance' because my field of vision isn't great enough to perceive who's talking at that range or to tell if they are talking to me or someone near me. It is for this reason that getting to know new people is such a challenge for me."

While he's thoughtful about the problems relating to his albinism, Burbey says he doesn't spend much time worrying about how they'll affect his future. Will he find a wife? Who will drive the family car? For now, they're questions that don't concern him. What's foremost on his agenda is attaching himself to a band.

"One day at a time," he says, when questioned about how he'll deal with his albinism in post-college days. "One day at a time."

As an albino, she has other woes about which she's more than willing to complain. A discussion of her vision, for example, brings on a litany of beefs.

"I have to wear these big pieces of crap on my eyes and I hate it," she whines. "Plus, I have to wear sunglasses that make me even worse.

And if that isn't bad enough, her eyes dart around -- another common trait of albinos.

"Pamela [a classmate] said, 'Why do you keep moving your eyes?' I said, 'Because God made me that way, so just shut up!"

And don't even ask Samantha about not being able to lie in the sun to get a nice bronze look. It'll only get her more angry.

"I can't get a sun tan and you know it's easier to get guys that way, if the girl has a sun tan, you know. It's so stupid! I have to put the goop all over me because I go outside in the summer. It's stupid!"

Despite those problems, life has gotten better for Samantha since her transfer last fall from Salem Lutheran School on the city's Northwest Side to the Janesville School for the Visually Handicapped, where's she's a fifth-grader and considered popular. At Salem, she didn't have it as good.

"They always teased me about stuff," she complains of her ex-classmates. "They wouldn't play with me for some reason; I don't know why. I felt like kicking each and every one of them butts. Only a couple of them were my real friends, that's it."

She's happier, too, these days because she's given herself a new name: Samantha. About six months ago, she took the name from a book character and has since insisted on being addressed as Samantha. (One condition in granting this interview was that she be called that name in this story.) Most of her friends at Janesville refer to her by her new name, but due to the carelessness of some teachers, word has spread among classmates that her real name is Wendy. That's caused more difficulties for the pre-teen girl.

But she's gotten even with some of those who don't call her by her chosen name. "There's this one boy who calls me Wendy's Restaurant," she says. "His name is Steve, so I call him Stevie Wonder."

Samantha finally smiles; her revenge against the blind youth who dared to call her Wendy was sweet.

For one day, Kyran O'Brien was the most popular kid in his high school biology class. The students were studying albinism and everybody wanted a firsthand look at how an albino's hair differs from others'. Often the object of ridicule because of his appearance, O'Brien suddenly was a minor celebrity.

"There's the whole bit with looking at the hair under a microscope," he says. "The hair follicles on albinos are clear -- completely clear -- and it looks really neat under a microscope. I swear I was going to lose all my hair that day. Everybody was like, 'Can I try one of your hairs?' It was pretty humorous."

Years later, O'Brien still is amused by people's fascination with his looks. He gets to Summerfest each year and enjoys seeing albino musician Johnny Winter, an occasional performer there, and inevitably people mistake him, with his long white hair, for Winter.

"People are like, 'Wow! Can I buy you a beer?' It's so funny. Last year all of these people had a bet [on whether he was Johnny Winter] and I'm having a beer when one of them said, 'Can I ask you a real personal question?' I said, 'Are you going to buy me a beer first?' I knew the question -- he [Winter] was playing at the other stage."

O'Brien got his beer and announced to the bettors that he wasn't the musician, nor was he related to him.

Despite poor eyesight, O'Brien --an accountant and artist -- gets around without a car and doesn't let his condition get in the way of his social or professional goals.

"I'm legally blind but it hasn't really hampered me in that many ways," he says. "It did in one respect in that I wanted to go into architecture at UWM, but they told me that I probably shouldn't. But I've always pursued photography and fine arts and I love to play basketball. In a lot of ways, it's helped me where my artwork is concerned, I know that. A lot of people look at my art and they're like, 'Wow, when you focus your eyes just right, it's perfect.' Well, it looks right to begin with to me."

O'Brien comes from a family of 11 children, three of whom have the genetic disease. When with them in public, he says, his one-man walking freak show -- as O'Brien describes the way he occasionally feels -- turns into a three-ring circus.

"It's even more uncomfortable being around other albinos. Like, if I go out to a bar with my brother and sister, with the three of us, there are people who are like, 'Holy shit! I've seen one of them, but I've never seen three of them!' Everybody's got to make a comment or something."

As a child, he heard the usual names; Whitey and Snow White are among the ones he recalls. But O'Brien didn't let them get by without protest. "Usually I'd be angry and sometimes hurt, especially when all you wanted to do was fit in. I got into a lot of fights."

He was so sensitive about his condition then that he even refused to cooperate with physicians who were studying the disease. "I was asked to go in front of a doctors' convention when I was in high school because they knew so little about [albinism] and they just wanted to talk to people about it and I absolutely refused. It's the whole idea of being a freak in a freak show. It's like, no way."

As an adult, he's accepted his condition and sees how he can benefit from his looks. The name-calling (rarer now) doesn't bother him, and when people ask about his looks, he gives them a polite answer.

"You've just got to realize that it's something you can use to your advantage," he says of his condition. "Like myself, I'm an aspiring artist. I'm going to be a good artist and I'm going to have shows. One way to get yourself known is by using what you have, and that's something that's taken me a long time to realize.

"I realized that working at the Arlene Wilson Modeling Agency [as an accountant], where you look at everybody and everybody wants to look different. And it's like, wait a second! Well, I'm starting out in life looking different, you know, so why not use it as something that's a tool?"

"She told me that if they don't know you, how can they say anything about you?" he says. "She said if they say something offensive, if it's just making fun of the color of your skin or hair or whatever, don't worry about it. She also said, 'You've got a brain in your head and if someone's really getting on your nerves, use your head and don't try to fight them.' "

For DeVore, that meant becoming master of the sharp retort. "I don't like to brag about it, but I got really good at insulting people," he says. "If a guy would just keep after me for a couple of weeks, I'd just come up with something, and some of the things were really crude."

Despite his mother's reassurance that he was just another human being in a world of different types of people, DeVore was self-conscious about his looks. "All I have to do is stand somewhere and I'll automatically draw attention to myself just by being in a room," he observes. "I kind of know how black people feel. My second day at MATC [Milwaukee Area Technical College], I went into the bathroom and as I was walking in, there were these three black guys and one of them looks at me and goes, 'Damn, he white!' He pointed and yelled as loud as he could. I just looked at him and laughed. I can imagine that's how a black guy must feel like the first time he goes to someplace like Cudahy or Oak Creek, because a black person down there is almost as rare as I am anywhere."

DeVore happily converses with strangers who inquire about his appearance -- an almost everyday occurrence, he says. "Someone will ask me why is I my hair white? I'll tell them I was born this way. That's my pat answer. If they're interested any more, they'll ask another question. The other day I was walking to the drugstore to get a pack of cigarettes and on the way four kids asked me why my hair was white."

Most who strike up street conversations compliment him on his looks -- his hair, particularly. "One person told me I should let my hair grow long, cut it off and sell it," he says. "He said, 'There are people who would pay you $60 a pound for your hair.' "

DeVore's concern as an unmarried young adult was whether a woman would like him -- and not just fall for his unusual appearance. "I was afraid I'd be 50 and single," he says. "I thought women might want to talk to me, might want to meet me, but once the curiosity's gone, do I have what it takes to hold them? That was my biggest fear -- that someone would be interested in me because of the way I look, then be let down by what I had to back it up."

Despite that fear, he found a wife and now feels the pressure's off. (He has other concerns these days, too, with a young son.)

Although he's tolerant of people who gawk at him, his wife and friends are annoyed by the inquisitive looks he gets from strangers. "She's wanted to punch some people out just for staring," DeVore says of his wife. "It bothers her more than it does me. It bothers my friends, who are essentially normal. Normal-appearing, anyway."

"I became very self-conscious, developed a real inferiority complex," says Helstad, who was dean of the University of Wisconsin-Madison Law School until retiring last spring. "I went through a very difficult period in grade school. One didn't quite know how to handle the problem [of albinism], I think, and there wasn't the kind of psychological specialists around at the time that might have been some help."

When other children went outside for recess, Helstad usually stayed in the classroom to read. And when he dared to participate in group activities, he knew he'd be chosen last when teams were selected. Who wanted a nearly blind, odd-looking kid on their side?

"I would simply resign myself to being last on the totem pole, you might say," he recalls with a smile. "If we played tag, I was 'it' most of the time. It was a difficult period. I think I didn't fully realize it at the time, but I used to have a lot of headaches -- would cry easily -- and I think that was because of the stress I was facing, realizing that I was different from the other kids."

But his days spent studying rather than romping around during recess paid off. He became an honor student, graduating at the top of his class in elementary school and high school, and was nearly a straight-A student at the UW-Madison Law School, from which he graduated in 1950.

Helstad began his career as a professor at his alma mater, and it wasn't always an easy job because of his near-blindness.

"I think it did affect my teaching ability," he says of his poor vision. "In many cases, I ended up lecturing for the most part, rather than having a give-and-take discussion because it was difficult for me to see the individual students. So it was a disadvantage. But I managed to get through it all right and, for the most part, had decent teaching ratings."

He adds: "I've been able to live a normal life, basically. I would say that the two ways in which it has been a handicap is that I am not able to drive a car, and in a car-oriented society, that is a definite handicap. The second way is that I have great difficulty recognizing people."

No longer a man with a self-image problem, Helstad believes his albinism has made him a gentler person -- a trait that, he concedes, is not necessarily good for an attorney.

"I'm inclined to think that it has helped make me perhaps a kinder person than I might have been, in the sense of being able to see other persons' problems and see other persons' sides in arguments more readily than I otherwise would. But that, of course, is speculation. I just don't know.

"I think it might have affected my personality in the sense that I am not a very aggressive person as such. I'd rather switch than fight in most cases. I'd probably make a better judge than trial lawyer."

(c)Milwaukee Magazine